• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

父母对青少年特发性关节炎护理的满意度:来自一组使用JAMAR问卷的意大利儿童的调查结果。

Parents' Satisfaction with Juvenile Idiopathic Arthritis Care: Findings from a Cohort of Italian Children Using the JAMAR Questionnaire.

作者信息

Romano Federica, Mombasi Precia, Garofalo Franco, Namarvari Nima, Franco Francesco, Defabianis Patrizia, Berta Giovanni Nicolao

机构信息

Department of Surgical Sciences, C.I.R. Dental School, University of Turin, Via Nizza 230, 10126 Turin, Italy.

Paediatric Rheumatology Unit, Paediatric Department, Rivoli Hospital, Via Rivalta 29, 10098 Rivoli, Italy.

出版信息

Medicina (Kaunas). 2025 Jun 19;61(6):1115. doi: 10.3390/medicina61061115.

DOI:10.3390/medicina61061115
PMID:40572803
Abstract

: Despite recent advancements in treatment, children with juvenile idiopathic arthritis (JIA) continue to experience poor health-related quality of life, and data on patient and parent satisfaction with disease management remain limited. Thus, this cross-sectional study aimed to explore the factors influencing parental satisfaction with their child's JIA care, using the juvenile arthritis parent acceptable symptom state (JA-PASS). : Parents of 63 children (43 females and 20 males; mean age 12.2 ± 3.7 years) diagnosed with JIA completed the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The study analyzed JAMAR responses, along with demographic data, disease duration and activity, and current medication use, to identify clinical factors that influence JA-PASS. : According to the JAMAR, 55.6% of parents expressed satisfaction with their child's current condition. In a multiple regression analysis, significant factors influencing JA-PASS included medication side effects ( = 0.033), current disease activity ( = 0.009), and the psychosocial well-being rating in the JAMAR questionnaire ( = 0.048). : JA-PASS should be integrated into patient assessment protocols, as it provides valuable insight into parents' perceptions of disease progression and effectiveness of therapeutic interventions.

摘要

尽管近期在治疗方面取得了进展,但幼年特发性关节炎(JIA)患儿的健康相关生活质量仍然较差,关于患者及其父母对疾病管理满意度的数据仍然有限。因此,这项横断面研究旨在利用幼年关节炎父母可接受症状状态(JA-PASS)来探讨影响父母对其孩子JIA护理满意度的因素。

63名被诊断为JIA的儿童(43名女性和20名男性;平均年龄12.2±3.7岁)的父母完成了幼年关节炎多维评估报告(JAMAR)。该研究分析了JAMAR的回答,以及人口统计学数据、疾病持续时间和活动情况,以及当前的用药情况,以确定影响JA-PASS的临床因素。

根据JAMAR,55.6%的父母对其孩子目前的状况表示满意。在多元回归分析中,影响JA-PASS的重要因素包括药物副作用(P = 0.033)、当前疾病活动(P = 0.009)以及JAMAR问卷中的心理社会幸福感评分(P = 0.048)。

JA-PASS应纳入患者评估方案,因为它能为父母对疾病进展和治疗干预效果的看法提供有价值的见解。

相似文献

1
Parents' Satisfaction with Juvenile Idiopathic Arthritis Care: Findings from a Cohort of Italian Children Using the JAMAR Questionnaire.父母对青少年特发性关节炎护理的满意度:来自一组使用JAMAR问卷的意大利儿童的调查结果。
Medicina (Kaunas). 2025 Jun 19;61(6):1115. doi: 10.3390/medicina61061115.
2
A systematic review of the effectiveness of strategies for reducing fracture risk in children with juvenile idiopathic arthritis with additional data on long-term risk of fracture and cost of disease management.对降低幼年特发性关节炎患儿骨折风险策略的有效性进行系统评价,并提供关于骨折长期风险和疾病管理成本的额外数据。
Health Technol Assess. 2008 Mar;12(3):iii-ix, xi-xiv, 1-208. doi: 10.3310/hta12030.
3
A Virtual Self-Management Intervention for Adolescents With Juvenile Idiopathic Arthritis: Protocol for the VISTA-JIA Randomized Controlled Trial.一项针对青少年特发性关节炎青少年的虚拟自我管理干预:VISTA-JIA随机对照试验方案
JMIR Res Protoc. 2025 Jun 27;14:e69539. doi: 10.2196/69539.
4
Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis.电子健康和移动健康干预措施对儿童和青少年幼年特发性关节炎的有效性:系统评价和荟萃分析。
J Med Internet Res. 2022 Feb 2;24(2):e30457. doi: 10.2196/30457.
5
Methotrexate for treating juvenile idiopathic arthritis.甲氨蝶呤用于治疗幼年特发性关节炎。
Cochrane Database Syst Rev. 2001(4):CD003129. doi: 10.1002/14651858.CD003129.
6
Summary of AHRQ's Comparative Effectiveness Review of Disease-Modifying Antirheumatic Drugs for Children with Juvenile Idiopathic Arthritis.美国医疗保健研究与质量局(AHRQ)对用于青少年特发性关节炎患儿的改善病情抗风湿药的比较效果评价总结。
J Manag Care Pharm. 2012 Jan-Feb;18(1 Suppl B):1-16. doi: 10.18553/jmcp.2012.18.S1-B.1.
7
Evaluation of Satisfaction With Care in Paediatric Intensive Care Units: Swedish Parents' Perspective.瑞典父母视角下的儿科重症监护病房护理满意度评估
Nurs Crit Care. 2025 Jul;30(4):e70086. doi: 10.1111/nicc.70086.
8
Methotrexate for treating juvenile idiopathic arthritis.甲氨蝶呤用于治疗幼年特发性关节炎。
Cochrane Database Syst Rev. 2001;2001(3):CD003129. doi: 10.1002/14651858.CD003129.
9
Factors that influence parents' and informal caregivers' views and practices regarding routine childhood vaccination: a qualitative evidence synthesis.影响父母和非正式照顾者对常规儿童疫苗接种看法和做法的因素:定性证据综合分析。
Cochrane Database Syst Rev. 2021 Oct 27;10(10):CD013265. doi: 10.1002/14651858.CD013265.pub2.
10
A shared-management web-based intervention for sleep deficiency in school-age children with juvenile idiopathic arthritis and their parents: feasibility and acceptability study.一项针对幼年特发性关节炎学龄儿童及其父母睡眠不足的基于网络的共享管理干预措施:可行性和可接受性研究。
J Clin Sleep Med. 2025 Jun 1;21(6):1007-1021. doi: 10.5664/jcsm.11610.

本文引用的文献

1
Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya.肯尼亚一家三级转诊医院中照顾幼年特发性关节炎患儿的家长们的经历。
Front Pediatr. 2025 Mar 31;13:1443529. doi: 10.3389/fped.2025.1443529. eCollection 2025.
2
Evaluation of the psychometric properties of the Functional Ability Scale in children with juvenile idiopathic arthritis.
Reumatol Clin (Engl Ed). 2025 Feb;21(2):101802. doi: 10.1016/j.reumae.2025.101802.
3
Current Validated Clinical and Patient Reported Disease Outcome Measures in Juvenile Idiopathic Arthritis.目前已验证的青少年特发性关节炎临床及患者报告的疾病结局指标
Open Access Rheumatol. 2023 Oct 9;15:189-206. doi: 10.2147/OARRR.S261773. eCollection 2023.
4
Patients' and parents' satisfaction to improve patient care in JIA: factors determining acceptable symptom state measured with JAMAR.患者及家长对改善幼年特发性关节炎患者护理的满意度:用JAMAR测定可接受症状状态的决定因素。
Rheumatology (Oxford). 2023 May 2;62(5):1920-1925. doi: 10.1093/rheumatology/keac658.
5
Patient Acceptable Symptom State (PASS) in patients with primary Sjögren's syndrome in daily clinical practice.原发性干燥综合征患者日常临床实践中的患者可接受症状状态(PASS)。
Clin Exp Rheumatol. 2022 Dec;40(12):2303-2309. doi: 10.55563/clinexprheumatol/mnqiy9. Epub 2022 Nov 28.
6
Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study.照顾患有遗传性或罕见病儿童中的性别差异:一项混合方法研究。
Children (Basel). 2022 Apr 27;9(5):627. doi: 10.3390/children9050627.
7
Juvenile Idiopathic Arthritis Treatment Updates.青少年特发性关节炎治疗进展
Rheum Dis Clin North Am. 2021 Nov;47(4):545-563. doi: 10.1016/j.rdc.2021.07.009. Epub 2021 Sep 2.
8
Juvenile idiopathic arthritis: from aetiopathogenesis to therapeutic approaches.幼年特发性关节炎:从发病机制到治疗方法。
Pediatr Rheumatol Online J. 2021 Aug 23;19(1):135. doi: 10.1186/s12969-021-00629-8.
9
Explaining socioeconomic disparities in health behaviours: A review of biopsychological pathways involving stress and inflammation.解释健康行为中的社会经济差异:涉及压力和炎症的生物心理途径综述。
Neurosci Biobehav Rev. 2021 Aug;127:689-708. doi: 10.1016/j.neubiorev.2021.05.019. Epub 2021 May 25.
10
Parent-Reported Medication Side Effects and Their Impact on Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis.家长报告的青少年特发性关节炎患儿药物副作用及其对健康相关生活质量的影响
Arthritis Care Res (Hoboken). 2022 Oct;74(10):1567-1574. doi: 10.1002/acr.24610. Epub 2022 Jun 14.